christinacalvo30 said...Well hello everyone . I was recently sent a link to this forum from my dads girlfriend. He was diagnosed with ESLD, secondary to hepatitis C, ~ 4 months ago. He will be 53 yo in 2 days. Im having a very hard time dealing with and trying to make sence of all the symptoms he is going through. Im a nurse and I'd like to think of myself as educated but I found Im just as lay as non health professionals when it comes to this. I live over 2000 miles away from him and I HATE it. There is not much I can do over the phone but Im doing all I can. Im hoping to get some encouragement and support from this site.

My dad was diagnosed years ago with bipolar disorder as well. He is having a difficult time with this his new diagnosis and Im having a hard time determining if his mental state is from the bipolar or the ESLD. He is taking meds for this however he goes though stages of depression where he just wants to give up and other days we cry together and he says he'll fight with every thing he has. Im so confused and I cant pinpoint why everyday is a rollercoaster of emotions. He has always been a sharp man but his ability to be rational and make sound decisions comes and goes by the day. Its almost like he has dementia. I understand the ammonia levels and other electolyte imbalances can cause this but will this ever get better when things are better controlled?

My dads edema was causing him serious breathing problems and he has since underwent the operation in which the lining of the lungs were sealed by talc to prevent fluid from filling the plueral space. This was successful but now his abdomen looks like a basketball(I've seen through e-mail pics) His belly button is herniated and he is starting to have difficulty breathing again. I spoke with him on the phone today and he could hardly talk and was panting like a dog. I made him go to the ER 3 days for a theraputic paracentesis (TAP) and they sent him home saying they dont do that because it will just fill up faster and since he was having no difficulty breathing (at that time) it was not needed(which I know is b.s.) They increased his lasix and spiractalone, put him on a NO sodium diet and sent him on his way. Its now 3 days later and he is in respiratory distress. He is so uncomfortable, cant sleep, get up and walk or even talk. Im afraid the pressure in the abdomen will cause the talc seals to break...Am I nuts? Not to mention its theraputic to give him comfort and some quality of life. Being confined to bed is no life...I understand that the disease cannot be treated but I know the syptoms can. I spoke with his PCP and will see him tomorrow re: this. Hope all is well through the night. Im hoping this new diet and med regimen will allow him to live a half way normal life.

Everything is happening at such a slow pace for my taste. Finally after 4 months he is going to see a gastrenterologist for this. The closest Hepatologist is 6 hours away . I want to get him on the transplant list and I've even considered being a live donor and giving him part of mine (I am a blood match). But even this I know very little about. Im trying to help him through this but being so far away from him there is only so much I can do. I feel helpless Thank god he has a very supportive girlfriend who is sticking right my his side. God bless you Judy !

Im looking for some advice on how to be more proactive about the future and what to expect for today. Im open to it all. Thanks so much for reading.

Sincerely,

Christina

I am Judy and everything Christina wrote is what we are going through. I can tell you he almost died on me on the way to the hospital on one of his er visits, his right lung was completely filled and he was gasping for breath and he did not know where he was. He had the talc seal done after that and was sent home and had to go back and have it done 3 more times till they let him come home. He came home Christmas Eve Eve and now we are dealing with the acites. He is on the water pills and only problem is that they make him so lathargic. I plan to take him to the Dr at 11:15 AM and will let you know what he says.

Yes I did show her this site I was reading it and so amazed on how wonderful every one is here. I joined too

Hi, Judy! I seemed to remember you posting, but don't recall your user name. Did you change it or is this your first post and I have you mixed up with someone else. Pink Grandma does a better job of keeping new members straight than I. My memory is not good at all.

I hate that you and Christine are having to watch your loved one go through so much. I am on "water pills" (diuretics) myself for ascites and edema, and I don't believe that's what is making him lethargic. I believe it is the liver disease. Everyone with liver disease sleeps a lot and has low energy. It is one of the reasons I could no longer work, though I switched to P/T for the last 12 yrs. I worked. It got to the point where I could not even work 10 hours a week, between the fatigue and pain from ostenecrosis.

I know that Christine mentioned that he has not even seen a GI doc yet. It's too bad that a hepatologist is so far away, but at the very least get him seen by a GI doc (I believe his appt. was today) and referred to a transplant center for evaluation. (I'm assuming he has no alcohol intake.) A primary care doc and ER are in no way equipped to deal with his serious state of health at this time.

Hello hep93, Thank you for replying. I am new but I did see a Judy on here before. I just received this reply in my email, so I just saw your post. I am sorry your going through all of this yourself and I hope you are doing good.Well, I took him to the Dr and my girlfriend helped me because he was so out of it. I dressed him and with her help we were able to get him to the car and to the Dr. As soon as we got there, the Dr had two chest xrays done on him (it was hard to hold him up for them and make sure he was not going to fall). His fever was still at 100.9, last night it was 103.0 and I got it down to 100.0 and when the Dr did see him he said he had a infection and admitted him to the hospital. I am home just wash his comfy robe and get his cell phone cord. I plan to get right back to the hospital as soon as his robe is done in the dryer.Anyways, The Dr is going to check his acites, I think by ultrasound and determine how to the tap. First they are trying to take care of his infection. It is hard, we live in Brownsville Texas and no special Drs here. closest one is either San Antonio or Houston and he is not fit for a trip that far. What is so puzzling, is he was doing so much better last Thursday. Do you know, that the Drs keep telling him his liver is not that bad? I can not believe it, we went to the internist and he told him that his daughter wants to help him with his liver and the dr told him we are not there yet, your liver is not that bad.

Thanks for posting, Judy. It's good that his infection is being taken care of, and perhaps he will also be able to get the draining done.

Unfortunately, liver patients have to be near death to qualify for a transplant. It is determined by a MELD score, as well as other things. But they also have to be strong enough to survive the transplant. It is a real balancing act, and not as simple as just having someone willing to do a partial live donor transplant. If he were to be considered for a transplant, it would mean trips to a transplant center...and you say he would not be able to take a long trip. Liver disease is an odd thing. One can be doing pretty well one day and unable to get out of bed the next. That's why we say it is a "roller coaster." At least he is being cared for at the moment and hopefully will return home feeling somewhat better.

Yes Hep93 you are exactly right. The distance is a big issue. I wish he was here with me in CT because we have both Yale and Hartford transplant. We just need someone to tell us what we need to do and when and we will do it! Im afraid that time is going by fast and running out. I know its a long work-up process. When is it a good time to get that ball rolling? How much do you know about live donor transplants? Is there anyone on here who has had one?

Welcome to the forum Judy. The doctors keep telling us the same thing about my husband. They say his labs don't look that bad and he is not sick enough to be listed yet. He just under went the TIPS procedure in January due to a massive bleed from varices in his stomach. This disease can be very scary and unpredictable. I'm so sorry that your boyfrined suffers with it.

Christina, I don't think there is anyone here currently that has had a live donor transplant. I think I read something on the Mayo website about it. Try googling it and you can find a lot of information.Butterflythree

Some transplant centers allow live donor transplants (I believe that Mayo is one that does), but many do not. There are also optimal livers that are donated from the deceased and those that are not so optimal, but are used anyway when there's nothing else available for someone who is dying. This is also a center-by-center decision. They all seem to have different criteria. I would think that the closest transplant center to your dad is in Dallas-Ft. Worth. Mayo also has a transplant center and clinic in Phoenix, AZ. You might want to call one of them and see if they do living donor transplants and also ask when would be the right time for transplant evaluation.

Hello Helen, Thank you for the welcome, ( I hope you do not mind I read your name in your thread of variances) OH MY what a nightmare you had. I am so sorry for all your enduring and have to say your a gem for holding up as you are.

After reading all of that, I am so frightened for my Carmelo, I am sorry for being so upset but I am working off 2 hrs sleep off and on for last week and besides my beloved in the hospital ( btw, I talked to him this morning and he is doing much better, he was talking normally but still tired). Its his birthday today ( I was putting together photos for him in a screen play photo frame so he can see it flash up all his family). So sad he is in hospital on his birthday but so thankful he sounds better. I also breed Traditional Siamese Cats (old fashion look), and my Sire has come down with a swollen gums and they hurt him so much that he has scratched at his jaw and this morning I found him with a cut on his neck. I just found out my mom may be in the beginning stages of Alheimers (our grandfather suffered from that).I just read quite a bit of back threads and scared myself so much of what is to happen with my Carmelo and it is killing me to no ends to see him suffer as he does now. How will I cope??? We do not have groups here to go to, so I am so thankful to find this forum on the web.

The other thing that is bothering me is that they tell us keep him off sodium, yet when he is in the hospital they serve him foods with sodium. Does that mean he can have sodium again???? Will not that cause the acites again??? Sorry I am not very educated in all of this but I am trying to understand so I can help him.Thank you wonderful people for giving us some time,Judy

Hi Judy, they normally put them on a low sodium diet as the body actually needs some sodium to function. We restricted my husband's too well. His sodium got so low that it was having an ill effect on his health. Sorry I don't remember what that effect was now. But we had to start using a little more sodium in his diet. Ask the hospital if he's on a low sodium diet and if he is not, call his doctor and ask him if he should be. The diet the hospital serves a patient is ordered by his doctor. The hospital will not take your word for it.

With him having problems with ascites and having the TIPS procedure I would tend to think that a low sodium diet would be a given.

Hi Judy, I had the same problem with sodium. When my husband was hospitalized the doctors asked me if he was on a special diet, and I told them low sodium. They were giving him regular meals. You would think that they would know that a liver patient needs to be on low sodium. They had my husband thinking that he could eat whatever he wanted to when he got home.Butterflythree

Just wanted to add my welcome to the forum. I agree that your husband should be on some type of sodium restricted diet unless during blood work they have found his sodium to be too low. Call the attending doc and check this out. Connie and Butterfly are correct that doc's are human and they can forget to mark a restricted diet and the hospital will only follow his orders, even if it looks obvious to the rest of us. I can certainly understand your fears, it is all so overwhelming whether you have the disease or watching a loved one cope with it. I hope you both recieve the support that I have on this forum.

Good luck on your journey

Lucy

PS I am an animal lover myself and on days seems like I have my own personal zoo, one of which is "my baby" siamese cat. Hope your feels much better soon.

Sorry I have not posted, Thanks for the information Pink Grandma, Butterfliesthree & hi Lucy nice to meet you too. So you see how nice a siamese is to have around, they seem to know when you are hurting. My Valleboy is ok, it seems he has an ear infection from who knows what but we are medicating his ears and giving him antibiotics. So he is healing (wish it was that easy for my Carmelo).I visited him in the hospital alot and he was doing ok after they took the tube out. He was so happy and said he felt good. I think it was the pain killers that had him happy. The next day, he was groggy and said they kept him up all night and he just wanted to sleep, so I did not bother him in the morning. Later at that morning he called all upset that they did not have one of his meds and for me to bring it. I took it to him right away and I could tell he was not feeling better. I asked him what was wrong and he said he thought he was coming home tomorrow but they said no. So he was depressed and he fell back asleep as I was there. The nurse took the med and info but told me he was going to be let out today, after his other dr visits him. He said if everything is ok. So for me to keep his meds and incase he stays, they will order it from the hospital pharmacy. He did come home but he had so much anxiety and the waiting was driving him crazy. When I finally did get him home, we were both on nerves. I had a hysterectomy last year and I get such hot flashes and I can barely take his mood swings but he does get them and he can be so mean. I try not to get upset with him but it is so hard. Any little thing sets him off and he will aim the blame on me. He will say hurtful things like, when the homehealth nurse was at our home, I was to get a nebulizer and I wanted to get it right away but he told me no wait till medicare can get it. So the nurse explained she could get a company to come out and get it. She told me she would take care of it and he said good because that would be one thing she (me) would not get done. I do so much for him but he does not see it, he only sees the things that I can not help him with.I feel so mad when he gets like this and I start feeling like I can't take this anymore and I want to run and not come back but then I feel so guilty for thinking this. I hate myself when I get mad and I do love him so much and I just wish I could help him but I can't and it is so frustrating. I know it is his bi polar and the some side effects and the liver itself not allowing him to have a good day but he can be so ....I am sorry for whinning and thank you for letting me cry here.

No need to apologize Judy. We've all been there. There is an old expression, "It's the booze talking." Well, in the case of ESLD, "It's the hepatic encephalopathy talking." Patients with ESLD have very short memories and often a distorted version of reality. I know it is very painful for you. You do and do and do to the point of exhaustion only to be left feeling unappreciated. You have to remind yourself that he doesn't mean the things he is saying. I'm certain he doesn't even realize he hurt your feelings.

When Harvey would get that way, I would wait until his mind was clearer before discussing it. He had no answers, but would always apologize and assure me that he knew who was really looking out for him.

Oh thank you for understanding Penny, it is so hard but I am trying to be here for him. Today he is home and it has been 3 days no BM and he takes his Enclose to help him but he is still not having one. I do know he could get amonia again if he does not have one. I am so worried because it makes him so zombie like and before that he gets encephalpathy. I am glad the nurse is coming today so maybe he can suggest something else to help him have a bm.Last night he had a feeling a nausia and now he will not let me do the breathing treatment for him (prescribed by the Dr) he has to have 3 x a day and he only did 2 x yesterday and today refuses too. He has an umbilical hernia and says it puts pressure on his adomen when he does the treatments and will not do them. lifts hands in dispair, because if I push, he pushes harder not to do it.God Bless you too Penny

Judy, I am so sorry that your husband is giving you such a hard time. I am glad that you have a nurse to give you a hand. Maybe he can get him to do what he is supposed to. Just remember it is the disease causing his reactions and not you. I'm sure he realizes how much you do for him. People often take out their frustrations on those they love the most. I'll continue praying for you.Butterflythree

Hey everyone. Just wanted to say hi and thanks to you all for giving Judy the support she needs. My dad has 2 serious diseases he is dealing with and Judy is having to deal with them both. My dad has been married twice and Judy is byfar the best thing that has ever happened to him. He has always been a big bully with his words, even with me. The diffenerence is I dont take his crap and I give it back to him twice as hard. Judy on the other hand is very passive and sensitive. He never thinks before he speaks and now with the ESLD its worse than ever! He cant do a thing for himself...Never could even before he got real sick. She waits on him hand and foot and he never goes without. Im am extremely greatful for her because who knows where he would be right now if she didn't have the patience and love that she does with him.

Judy, you know my dad loves you very much and he does seem unapreciative all the time. Im here to tell you that you are a saint! Dont give up on him, you guys need each other. Im so glad that you are a part of our lives and when all is said and done, I will always be here for you. I love you sooooo much! xoxo MUAH!

Not all transplant centers perform live transplantion. You would have to contact the center directly to determine if they do. You'll find a complete list of transplant centers on the Organ Procurement and Transplantation Network (OPTN) website at www.optn.org Just click on Members on the menu bar at the top of the page, then choose Member Directory.

Perhaps you can speak with your Dad regarding following Doctor's orders. A Transplant Team probably won't consider the procedure on someone who is not willing to stick to the regiment. I'm certain he is just being stubborn, but maybe you can convince him to comply.

((Judy)), I remember those days well. Don't feel guilty at all about any of your feelings.......they are completely normal giving your situation. Sounds like to me that you need to take a little time out for your self. Has hospice offered a volunteer yet? If not ask if they have any. I had one to come and sit with my husband for a couple of hours while I did errands. You need "Judy time" sometimes to get through this.

If they don't have a volunteer take a few minutes when ever possible to do something that you love or that calms you down. It could be reading an article in a magazine, take a bubble bath, time with your cat, what ever makes you happy for a few minutes. I would walk in our yard........sometimes 2-3 times a day. You have to take care of your self too or you will end up sick or in the funny farm. And believe me I know that it's hard to find those minutes but it is necessary for your own health and well being.....You will be no good to your husband if you get sick. Find something to laugh at everyday. Nothing is funny about this disease I know but laughter is a great stress reliever. I didn't even realize that I had forgotten how to laugh until months after my husband passed away.

Christina, what a wonderful daughter and friend to Judy you are. Both need any of the love and assistance that you can give them. And take care of you too. Just because you are not nearby doesn't mean that the stress of it all is not taking it's toll on you as well.

As always.......thoughts and prayers to all.........Pink GrandmaForum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

PG, it happens to the best of us and you are the best! I still maintain that your memory is much better than mine. We have had an unusually large influx of new members lately. So please, all you newbies, I hope you will cut us a little slack if we get confused occasionally.